http://repub.eur.nl/res/aut/10892/ List of Publications en http://repub.eur.nl/static-eur/img/logo.png http://repub.eur.nl http://repub.eur.nl/res/pub/39265/ 2013-01-24T00:00:00Z This Clinical Opinion points to a potential conflict between the scarcity of evidence on paternal preconception risk factors for adverse pregnancy outcomes and the view that preconception care should be also directed at men. We argue that from an ethical perspective, responsible fatherhood starts already before conception, as long as the evidence increases on the benefits of paternal preconception lifestyle (modification). Our explorative study suggests that the strength of the evidence for paternal preconception lifestyle modification is important for men. We argue that 5 aspects together determine the moral responsibility of prospective fathers to modify their behavior: the strength of the evidence of the risk factor, the modifiability of the risk, the efforts necessary to eliminate or diminish the risk factor, the severity of harm, and the probability that harm will occur and that it will be prevented by modifying the risk factor. The case of paternal preconception smoking illustrates the analysis. http://repub.eur.nl/res/pub/38202/ 2012-03-01T00:00:00Z In most Western countries, information on prenatal screening for Down syndrome is provided in the first-trimester of pregnancy. The purpose of this study was to examine whether this information should additionally be provided before pregnancy to improve the informed decision-making process. In an empirical study, we obtained data from pregnant women with respect to their preferences regarding information on prenatal screening preconceptionally. Questionnaire data (n=510) showed that 55.7% of responding women considered participating in prenatal screening for Down syndrome before pregnancy. 28.0% of women possessed information on prenatal screening preconceptionally. 84.6% preferred not to receive information preconceptionally in retrospect. In an ethical analysis, we elaborated on these preferences by weighing pros and cons. We considered two arguments against the provision of information on prenatal screening preconceptionally: women's preference to receive information in a step-by-step manner, and the risk of providing a directive message. We identified three reasons supporting its provision preconceptionally: the likelihood of making an informed decision could, firstly, be increased by "unchaining" the initial information from possible subsequent decisions, and, secondly, by providing women sufficient time to deliberate. Thirdly, the probability of equal access to prenatal screening may increase. To conclude with, we propose to incorporate an information offer on prenatal screening for Down syndrome in preconception care consultations. By offering information, instead of providing information, prospective parents are enabled to either accept or decline the information, which respects both their right to know and their right not-to-know. http://repub.eur.nl/res/pub/31255/ 2011-08-01T00:00:00Z Reproductive health has improved little in the last few decades. The Netherlands, particularly in large cities, has relatively high perinatal death rates compared with other European countries. Lack of improvement in reproductive outcomes despite improved quality of and better access to prenatal care strongly suggests that prenatal care alone is insufficient. We discuss how preconception care offers new strategies for improving reproductive health, how it usefully connects the life course of the affected individual and many health-care disciplines, and the benefits of combining a top-down policy structure and bottom-up organisation around caregivers. Given the likely benefits and cost savings calculated for the Netherlands, we conclude that failing to facilitate preconception care would reflect a breakdown of both professional and governmental responsibilities. http://repub.eur.nl/res/pub/30470/ 2008-12-15T00:00:00Z We studied the experiences of children identified by family screening who were found to be a mutation carrier for a genetic cardiovascular disease (Long QT Syndrome (LQTS), Hypertrophic Cardiomyopathy (HCM), Familial Hypercholesterolemia (FH)). We addressed the (a) manner in which they perceive their carrier status, (b) impact on their daily lives, and (c) strategy used to cope with these consequences. Children (aged 8-18) who tested positive for LQTS (n = 11), HCM (n = 6) or FH (n = 16), and their parents participated in semi-structured audiotaped interviews. Interview topics included illness perception, use of medication, lifestyle modifications, worries, and coping. Each interview was coded by two researchers. The qualitative analysis was guided by Leventhal's model of self-regulation. The children were overall quite articulate about the disease they were tested for, including its mode of inheritance. They expressed positive future health perceptions, but feelings of controllability varied. Adherence and side-effects were significant themes with regard to medication-use. Refraining from activities and maintaining a non-fat diet were themes concerning lifestyle modifications. Some children spontaneously reported worries about the possibility of dying and frustration about being different from peers. Children coped with these worries by expressing faith in the effectiveness of medication, trying to be similar to peers or, in contrast, emphasizing their "being different." Children generally appeared effective in the way they coped with their carrier status and its implications. Nevertheless, dealing with the daily implications of their condition remains difficult in some situations, warranting continued availability of psychosocial support. http://repub.eur.nl/res/pub/19895/ 1999-06-16T00:00:00Z Dit proefschrift betreft de ethiek van voortplantingstechnologie en erfelijkheidsonderzoek. Een boek over dit thema kan uiteraard op verschillende manieren worden opgezet. Om praktische redenen koos ik voor een opzet waarbij ik zoveel mogelijk gebruik kon maken van lopende onderzoeksprojecten binnen het Instituut voor Gezondheidsethiek. Het boek kreeg zodoende de structuur van 'capita selecta': een samenvoeging van afzonderlijk geconcipieerde, zelfstandig leesbare, hoofdstukken. Het verbindende thema - de 'rode draad' - is de verantwoordelijkheid van de arts, meer in het bijzonder de voortplantingsarts en de hulpverlener die betrokken is bij erfelijkheidsvoorlichting en - onderzoek: wat is in de verschillende contexten verantwoord handelen? Hoe krijgt 'goed hulpverlenerschap' hier gestalte?' Dat deze vraag urgent is in de context van de moderne voortplantingstechnologic, waar men voortdurend wordt geconfronteerd met nieuwe technieken en toepassingen, behoeft geen betoog. Door welke morele overwegingen zou de arts zich moeten laten leiden als de technologische imperatief geen betrouwbare gids is? (In hoeverre) mag of moet de arts zich bijvoorbeeld iets gelegen laten liggen aan de belangen van het eventuele toekomstige kind? De inhoud van 'goed hulpverlenerschap' staat ook voortdurend tcr discussie op het dynamische terrein van erfelijkheidsvoorlichting en -onderzoek: aan de orde is niet alleen de attitude van de betreffende hulpverleners, maar ook hun verantwoordelijkheid in concrete conflictsituaties.